Visible disabilities – Disability & Lifestyle Blog

“Why Would Anyone Want Me?” | Life With Disability & Chronic Illness

A photo of me, a young white female with long brown hair and blue eyes. I am seen from the shoulders up and I am looking straight ahead. I am not smiling — Me, aged 33

“I can’t see why anyone would want me”

As a disabled blogger, this is by far the most common message I receive from readers and followers – particularly those in their twenties, living with disabilities and chronic illness.

For anyone out there who has ever felt this way, I get it. I hear you!

Born in 1988 with a rare progressive condition (Ullrich congenital muscular dystrophy), I’ve personally struggled with various insecurities and a lack of self-worth my whole life.

For me, the belief that “no one would ever want me” was fuelled by cruel comments, ignorance and exclusion.

Growing up, I felt invisible, unseen, overlooked, and yet, painfully inescapably obvious to all. I wanted to hide away, and, at the same time, longed for someone to notice me. To see me, the person beyond the disability.

A photo of me, aged 15, with blonde hair and sad, sallow eyes. I'm looking straight at the camera. I have my hand to my mouth. — Me, aged 15

I was one of only two disabled students at a mainstream high school, surrounded by 700 able-bodied kids. I stuck out like a sore thumb! I was the anomaly. And, I was ever-aware of it.

Seated in my manual wheelchair, unable to transfer, weight-bear or self-propel, completely reliant on others for mobility, I felt helpless, useless, a burden.

At 13, during the month of May, I was admitted to hospital with pneumonia. One of many bouts throughout my life. I didn’t tell anyone at school. No one noticed my absence. No one asked. It seemed, no one cared.

Experiences such as this further exacerbated my introversion, isolation, my mistrust in others and the overwhelming thought that I was better off alone. You can only really rely on yourself, right?

My health has always been, for lack of a better word, crap! Deteriorating with the progression of time. It is an incredibly limiting factor. So too is relying on carers. I can’t get myself in or out of bed, I can’t dress or undress myself, I can’t drive, or work. What do I bring to the table?

Me, aged approx 30, sat in a hospital waiting room wearing a face mask

Spontaneity, what’s that? Everywhere I go, everything I do must be pre-planned. And often, those plans fall through when my chronic fatigue forbids me from leaving my bed for the entire day.

It’s no fun! It’s beyond frustrating and bloody miserable at times.

Why would anyone choose this life? Why would anyone choose to be with me? What can I offer?

I’ll be honest with you, these questions continue to plague my thoughts every now and then. Like a lingering grey cloud that will never pass by entirely.

A selfie of me, looking in the mirror, seated in my powered wheelchair. I have long, mid-brown hair and I'm wearing a grey cardigan and white leggings. In this photo, I am aged 33 — Me, in my Sunrise You-Q Luca powered wheelchair. Aged 33

Yes, I’ve had romantic relationships. Some good, some not so good. I’ve dated both able-bodied and disabled guys.

My brief stint on dating app Hinge was an experience! Guys can be shamelessly brutal, often telling me I’m no one’s type and they wouldn’t consider dating a disabled girl. Though tough to hear, I was never surprised, nor do I bear any resentment. Everyone has freedom of choice and can date whoever they want. I never felt any desire or inclination to convince anyone of my worth.

I won’t lie, my health issues and physical disability did present challenges, cause tension and resentment within relationships. Things were said that are forever imprinted in my memory.

The saying goes, “love is all you need”. I don’t believe this to be true. I think trust, loyalty and the ability to care for someone even in the darkest of times is arguably more important.

Love was very much present in one of my previous relationships, but deep down, I knew it wouldn’t last because I couldn’t rely on him. He was all in on the good days. But on the bad days – my bad days – it became increasingly clear that he wasn’t invested. He couldn’t cope. Love alone wasn’t enough.

A photo of me taken from behind - my face cannot be seen. I am at Whitby, looking out to the sea. I am seated in my powered wheelchair. My hair is tied up in a messy bun. In this photo, I am aged approximately 27 — Me, in my Quantum powered wheelchair, aged approx 27

I don’t want to feed you empty clichés or try to convince you it will all work out in the end; that there’s someone for everyone. Because relationships are hard, even without the added complexities of a disability or chronic illness!

What I will say, what I want to emphasise to anyone reading this, is to focus on your relationship with yourself. Be kind to yourself, prioritise your health, your wants and needs. Stop worrying about what others may or may not think of you. Does it really matter?

A black and white graphic image of a male wheelchair-user kissing the hand of a female wheelchair-user

When you do meet someone who is worthy of you, (yes, we’re ALL worthy of love, affection and intimacy), don’t try to hide your struggles and insecurities. Be open, honest and real with them. Let them see you at your very worst.

Some will cut and run. You will face rejection. We all do. This is part of life. Don’t waste your tears over these people. Trust me, it’s not worth it!

It’s easy to find friends and lovers when you’re young, fit, able and care-free.

But, this is where those of us living with debilitating conditions hold the advantage (lucky us!). Because our lives are far from easy and care-free. We can trust that the people who choose to be with us, no matter what, truly do care.

The Last 6 Weeks | Disability Battles & Small Wins

May was a funny old month, with slightly schizophrenic weather (is it summer yet?!), and some much needed time to myself.

Since I last blogged in April, I’ve been mostly occupied with life admin and catching up with friends.

The former doesn’t sound very exciting, and it isn’t, but as anyone with a disability or chronic illness knows, there are many ongoing battles to be fought.

I met with various doctors, occupational therapists, and mobility equipment reps. I even managed to recruit a new carer, not easy in the current climate, to drive me from place to place in my Motability WAV (wheelchair accessible vehicle).

My powered wheelchair, partly held together with gaffer tape, continues to fall to pieces, and is now in need of new batteries.

Why do they suddenly decide to fail, without warning??

This is all the more challenging since it isn’t a NHS chair, and so I am responsible for sourcing and funding repairs.

Despite actively bidding online and pursuing a move for over a decade, I still live with my parents in their home – far from ideal for any 33 year-old!

Finally, after a consistent bombardment of calls and emails, community housing managers agreed to meet with me in person.

Though empathetic, they openly admitted it is very much a postcode lottery issue, (I couldn’t tell you how many times I’ve heard that excuse). Consequently, it could take years to rehouse me!

I will persevere and hope for the best, while maintaining realistic expectations.

On a happier note, May provided some space for myself, as my folks took a little staycation.

People often misunderstand my need for solitude. Then again, these people have their own homes and the freedom to do as they please, when they please. It’s about freedom of choice and being able to live life on my terms.

As tiresome and frustrating as it is, this is the reason I battle with medical professionals, OT’s, community housing, social services, and so on – for a better quality of life!

“Though she be but little, she is fierce”

~ William Shakespeare

Storytime | Life Lessons ♿

Years ago, during a university art class, a fellow student sat idly, pissing and moaning about how awful and unfair his life was. (He wasn’t literally pissing, by the way. That would be odd!).

There, in my powered wheelchair, with teeth clenched, I chose to remain quiet while he complained about his superficial, so-called ‘problems’.

As I recall, he’d depleted the bank of mum and dad on nights out and booze, meaning he couldn’t afford to go clubbing again that week.

Oh dear, what an awful shame!

A lad opposite, who I didn’t know well, kept looking at me with a shared expression of annoyance – I remember it vividly. He finally interrupted, “you know what mate, we’ve all got problems! Maybe look around sometime”.

I couldn’t help but smile and offer a nod of respect.

I was 20 at the time. Now 33, my tolerance for ignorance and entitlement has dissipated with age.

Truth is, everyone, at some point in life, will encounter problems, challenges and setbacks. Indeed, we all feel stressed and depressed from time to time – these feelings are completely valid.

Of course, feeling depressed is NOT the same as suffering from depression itself. (That’s a whole other topic, which I won’t go into here).

I’m sure we’ve all been told, “others have it worse off”. While I find this phrase unhelpful and somewhat dismissive, I must concede, it is often true (sorry, not sorry!).

Not to undermine anyone’s struggles or experiences, I do think it’s fair to say that the problems of some people are far greater than those of others – to gain a little perspective, all you need to do is switch on the news!

Admittedly, over the years, I’ve allowed myself to indulge in moments of self-pity (not an attractive trait). The dark pit of despair is easy to fall into, and difficult to climb out of.

That said, I’ve never sulked or felt sorry for myself over what I consider petty complaints, such as missing out on a social gathering or event. Honestly, I’ve no time or patience for that sort of nonsense. Again, it’s about perspective.

For context, I live with a very rare, progressive, muscle-wasting condition (Ullrich congenital muscular dystrophy). Unable to weight-bear, I use a powered wheelchair and rely on carers to assist with physical activities. In addition, associated health issues affect everyday life.

On my darkest days, I would ask – Why me? What have I done to deserve this crap?

Funnily enough, no higher power ever answered. Which later lead me to ask – Why not me? What makes me so special?

Shit happens! And yes, some of us face more than our fair share of it. But like it or not, we must learn to accept, adapt and deal with it – limitation, loss, grief, disability, pain, trauma, illness…

What’s the alternative? Hide under the duvet covers and wallow? Trust me, that sort of self-destructive behaviour can only create further problems.

If I’ve learnt anything, it’s that life isn’t fair.

I continue to battle with frustration due to my health, physical limitations and circumstances over which I have no control. So, I now try my best to practice gratitude and remind myself of all the good things I am blessed with. I don’t always succeed, but I try.

I also find it hugely beneficial to avoid self-indulgent doombrains like the aforementioned art student!

Ouch! | Growing Up with Muscular Dystrophy

Much of my early childhood was spent collapsing on the floor, unable to get myself up.

Such fun, such fun!

Born with a rare form of congenital muscular dystrophy, I could only ever walk short distances, awkwardly, with the aid of custom-made leg splints.

Photo of me, aged 4, stood in primary school uniform and wearing leg splints

Photo of me (right), aged 8, with a primary school friend (left)

I was never able to climb stairs or tackle curbs. I tried, many times…and failed.

I would manage to stumble a few steps then drop in a heap.

At 33, my bony knees remain scarred from recurrent injuries. Small marks on my forehead serve as a reminder of falling forward onto the patio as a kid – That one hurt!!

At around the age of 9, I tumbled from a horse after it bolted unexpectedly. The result was a battered and bruised bum, as well as a lost riding boot!

Still, I got back on the horse – (well, I was lifted) – knowing I had no other option, since I couldn’t raise myself from that muddy puddle and walk away.

In 1998, aged 10, I became completely non-ambulant and dependent on my manual wheelchair.

Photo of me, at primary school, sat in my manual wheelchair

Though it was some relief to no longer struggle desperately to stay on my feet, I then found myself thrown from my wheelchair on numerous occasions – whether due to misjudged terrain, being pushed too fast around the school grounds, the absence of belt straps and anti-tippers (I know, I know), or simple recklessness.

Oh well, you live and learn!

Now, I’m teeny tiny in stature and so, I’ve always been manually lifted and quite literally chucked around. This, inevitably, lead to further falls – or rather, being dropped on the floor and bashed against furniture.

Most of the time, I managed to laugh it off – shit happens! Other times, it was pretty damn painful.

Some years ago, a routine chest X-ray revealed a fractured lower rib.

The radiographer approached me to ask if I knew about the fracture. I told him I did, (how could I forget?). He then asked if I attended A&E following the accident – “No, what’s the point? Nothing can be done for a fractured rib”.

Though visibly surprised, he shrugged and agreed.

There are many more incidents I could recall, such as ramming my powered wheelchair – and my knees – into the bathroom sink, (unintentionally, of course!).

My bloody knee, after I accidentally rammed my powered wheelchair into the bathroom sink!

My point is, in life, we fall, we get hurt, we break. We can either wallow in self pity, or take the knocks on the chin, (sometimes literally), and choose to get over it.

Saying that, I could do without anymore ouch moments!

“Falling down is how we grow. Staying down is how we die.” ~ Brian Vaszily

Navigating Love & Life as a Disabled Woman | Muscular Dystrophy

Let’s be honest, when we’re young, we’re all enticed by a pretty face or a good body. Attraction is primarily physical, and to put it bluntly, at 18, most of us would shag anything with a pulse – opportunity is everything.

I cringe when looking back at some of the guys I fancied and gave my attention to! What the bloody hell was I thinking?!

Each to their own, but I was never a one-night-stand type. And not because I’m a tiny, delicate woman in a wheelchair, and therefore more vulnerable. That didn’t even occur to me. Oh, the naivety of youth!

A collage of four photos of me in my powered wheelchair

Much later, I reluctantly signed up to dating app Hinge, which lasted a total of two months.

I tried modern dating (eurgh!), which, in my limited experience, seemed to consist of shallow idiots and the phrases “you’re no one’s type”, “get in the car!” and, “let’s book a hotel room”.

Responding with a firm no, I was told to “fuck off then”.

There are some lovely people out there!

On reflection, it probably wasn’t the best idea to tell one bloke that his car was shit, but it made me laugh as I rolled home alone in my powered wheelchair.

Growing up, a friend of mine repeatedly told me, “you need a big strong guy to pick you up and throw you around”.

I can see where she was coming from, but even as a young teen, I always thought, why? Don’t I just want someone to care?

Eventually, I did date that guy – the gym guy. And yes, for the first few months it was great. It was fun, liberating, and as another friend once said, “he gave you a sense of independence and adventure”. She was totally right.

In terms of practicality, it made life a hell of a lot easier for me, as a non-ambulatory wheelchair-user. For a fleeting moment, I thought that was what I wanted.

But, ultimately, I couldn’t rely on him and I felt very much like an option, a burden, and too much to take on due to my disability. He was physically incredibly strong, but mentally and emotionally very weak.

I didn’t realise it at the time, but at that stage, I was willing to accept the bare minimum – stupid girl!

I invested my time and energy in the wrong place, the wrong person.

The experience changed my outlook and, as cliché as it sounds, made me realise my worth.

You live, you learn, you move on.

As we get older, our perspective, values and priorities change.

These days, I can’t think of anything worse than attempting to flirt (awkwardly) with some Tinder clone. Quite frankly, I’d rather cuddle up at home, alone, with a nice cuppa tea!

At 33, my life certainly isn’t as I imagined or hoped for as a kid. Then again, with age comes the realisation that life rarely turns out as planned.

I’m no longer impressed by aesthetics. Trust me, a pretty face will only get you so far in life.

Above all, what I want is someone to care, unconditionally. Simple as that.

Don’t we all??

Don’t get me wrong, I cherish my alone time and independence, and I’m more than capable of caring for and supporting myself (mentally, anyway).

I’ve endured a fair amount of crap and spent over 90% of my life single. I’m certainly not the type to need a man.

I’m not interested in grand gestures, a lavish lifestyle, fancy house, or gym-bods!

But, for someone to choose you, want you, and stand by you, even when the shit hits the fan – especially when the shit hits the fan! That, to me, means the world.

Me, in my powered wheelchair, looking out to sea

My Disabled Body | Muscular Dystrophy

Anyone who knows me will tell you I’m incredibly self-conscious of my disabled body.

I’m much more of a behind-the-scenes presence, and I hate being photographed!

My insecurities have deepened over the years, as my condition (Ullrich congenital muscular dystrophy) has progressed.

My spine is curved significantly in a ‘S’ shape, shortening my torso and causing asymmetry. I am underweight with muscle degeneration, and contractures in all of my joints.

Oh, and I am a ghostly shade of pale!

Being so very slight of stature and a non-ambulatory powered wheelchair-user, clothes are ill-fitting, often uncomfortable and don’t drape well.

Most of the time I feel like a bag of crap!

As a kid, though aware of the physical differences between myself and my peers, I really didn’t care. I was generally happy with a good group of friends.

Me (right) with a primary school friend (left)

Aged 8, sat in my manual wheelchair at school

Me (second from left), aged 9, with primary school friends

On holiday, in my manual wheelchair. Aged approx 12

But, of course, kids (and adults) can be blunt, and, sometimes cruel with their words and observations. As time went on, I was subjected more and more to stares, pointing, judgement and exclusion.

I became a full-time wheelchair-user at the age of 10.

Back then, it was very much a case of ‘suck it up and get on with it, these are the cards you’ve been dealt’.

Looking back, I guess it affected me more than I realised.

My teens were hard. I became increasingly withdrawn, conscious of what I consider my flaws, and constantly compared myself to other girls, wishing I looked like them.

Me, aged approx 17, trying to avoid the camera

Then came the dating years…

Comments such as, “you’re no one’s type” and “no one’s going to want you” massively impacted my self-perception and relationships.

Somewhere along the way, I lost myself and my sense of identity.

Now aged 33, I appear more child-like than womanly. I can honestly say, I’ve never felt sexy, or even attractive, in my entire life!

I’m not body-confident, and I don’t think I ever will be. I still compare myself to others and shy away from people, places and opportunities.

But, I am really trying to accept the fact that there is nothing I can do about my body. It is what it is – unique. I need to make the best of what I do have.

If others don’t like it, that’s absolutely fine, but they can kindly fuck off!

In an attempt to push myself out of hermit mode, I recently ‘dressed up’, took some sour-faced selfies, and posted them on Instagram…

…Excuse the Listerine in the background, haha!

The response was positive, complimentary and sincere. It gave me the confidence to write this post and ‘put myself out there’.

Why? Because I am what I am. I’m not “normal”. But what is “normal”, anyway?

33 | Getting “Old” With Muscular Dystrophy

According to Generation Z, once you hit 30, you’re OLD!!

Photo of an old woman, wearing sunglasses and holding up both middle fingers

I recently turned 33 (positively primeval!) which, I guess, means I should be stocking up on Pond’s wrinkle cream, Werther’s Original, and tea – lots of tea!

Considering I still look 12 – a blessing and a curse – I might save my pennies and give the wrinkle cream a miss. I do love a cuppa, though.

A fairly recent selfie of me, in my powered wheelchair, wearing ‘old lady’ fluffy socks and no makeup

33

This year’s birthday was a tough one…

In October, I caught Covid (bit of a buggar!), which hit me hard.

“Normal” life came to an abrupt halt and, 5 weeks later, I’m still struggling with breathlessness, pain and exacerbated chronic fatigue.

For those of you who don’t know, I was born with a rare form of Muscular Dystrophy – a progressive condition. Consequently, my lung function is total crap, immunity impaired, and a significant scoliosis causes my internal organs to fight for space.

Illustration provided courtesy of ‘The Disabled Life‘

~ Find out more about my life with Congenital Muscular Dystrophy ~

I’m a seasoned pro when it comes to extended periods of enforced isolation and inactivity, resulting from a lifetime of ill health. Fortunately, I’m more than comfortable with my own company!

In all seriousness, spending your days sat in the same chair, in the same room, attached to a ventilator 24/7, unable to make it as far as the kitchen, let alone leave the house – it’s…really not good!

This latest period of downtime allowed me to reflect on my 33 years – what I’ve learned, and what I want to focus on going forward.

My Life Lessons

Stop caring what others think of me

(because, actually, they’re probably not thinking anything)

I can trace this back to a comment made by a fellow pupil at primary school who told me, “you look normal when you sit down but really weird when you walk”.

A photo of me, aged 4 or 5, wearing primary school uniform and visible leg splints

I remember it vividly and, ever since, I’ve been painfully self-conscious, particularly about my appearance. But, now I’m ‘old’, I’m trying not to care about the opinions of others, especially total strangers.

Take me as I am or not at all.

Be my true, authentic self

I once had a (sort of) date which ended up in the guy’s completely bare bedroom. In this room was only a bed, some strewn clothes and a copy of, Alice in Wonderland. Rather than attempt to flirt and seduce (yeah, I’m cool), I turned my attention to the book and asked what it meant to him.

His answer made an impression on me:

“I like it because it’s about being open-minded, being yourself, holding onto your identity, and being comfortable with who you are. I’m weird, you’re weird, everyone’s weird! And that’s a good thing, in my view.”

Man, he was…DEEP!

Don’t waste my time, effort or tears on those who don’t care

I think, for most of us, our social circle becomes smaller as we age. And this isn’t a bad thing! On the contrary, you learn who you can be your unfiltered self with, who is willing to tell it as it is, who has your back, and who you can count on when times are hard – the ‘no matter what’ friends and family.

I am guilty of investing too much energy into the wrong people. But, from here on, I will realise my worth and focus only on those who bring joy to my life.

Well, I must now bring this lengthy blog post to a close and get back to my milky tea and digestive biscuits.

~ The content old fart that I am!

Image of an old lady happily drinking a cup of tea

Muscular Dystrophy & Mental Health | Personal Strategies

My previous blog post touched on the topic of mental health and physical disability.

In response, a few people asked how I manage my mental health:

What exacerbates it, and what strategies I use to alleviate the symptoms ~

Although I dislike using the term ‘depression’ in reference to myself, it is something I suffer from, as, I believe, we all do to some degree and at some stage in our lives.

My bouts of depression are very much situational ~

I am a 32 year-old woman with a rare, progressive form of congenital muscular dystrophy. I am a non-ambulatory powered wheelchair-user, and I currently live with my parents in their home (not through choice).

How Depression Affects Me:

I withdraw, avoid social interaction, lose interest, lack motivation, procrastinate, overthink, overreact, become defensive, eat less, lose weight, neglect myself, don’t care what I wear or how I look, mood swings, sleep more, insomnia, chronic fatigue.

*DISCLAIMER: The information here is based solely on my personal experiences and circumstances. I am NOT in any way seeking to provide medical advice or instruction.

What I Do Find Helpful:

Saying no: As hard as this can be, it is sometimes essential for both my physical and mental health. It’s also important for me to acknowledge that I am not responsible for how others react. If I’m unable to attend an event or social gathering and others take this personally, that’s ultimately their issue, not mine.
Being selective about who I spend my time with: Age and life experience has made me review and evaluate the people in my life – who adds value and who doesn’t. Who are the “no matter what” friends? It may sound harsh, but I’ve learned it’s not only okay, but necessary to distance myself from certain people. It’s easy to find friends when you’re young, fit, healthy and carefree. But when times are REALLY tough, that is when you realise who and what matters most.
Listening to music (through earphones): A form of escapism, allowing me to block out the rest of the world and any unwanted distractions.
Getting out of the house: It can be anywhere, doing anything or nothing. Sometimes I just sit by the river and stare. Other times I like to venture out in the car, though for me, this means relying on someone to drive me around.
Express: Sometimes I lock myself away and cry, other times I sit all day in total silence. I would say, do what you need to; scream, shout, talk it through. Whatever works for you.
Do what you love: However small or insignificant it may seem, I try to do something, every day, just for me. It could be as simple as listening to my favourite song on repeat, writing, sketching, reading, watching TV or YouTube.
Self care: When I’m feeling low and I can’t be arsed with skin care, presentable attire or brushing my hair, I just spray myself, liberally, with my most expensive perfume. Granted, I’ll still feel like crap, but at least I smell great. It’s a small comfort requiring no effort.

What I Don’t Find Helpful:

Unsolicited advice: Superficial comments such as, “stay positive”, “get better soon”, “it could be worse”, and, “take some multivitamins” – This is neither helpful nor constructive.
Talking when not ready: We are often encouraged to talk and share our troubles. And, while I totally agree that it is ‘good to talk’, and we shouldn’t feel like we have to keep our thoughts, feelings and concerns to ourselves, I also think it should be on our terms. We are all different. Some people find great comfort in talking, while others don’t. I, personally, am the latter.

Muscular Dystrophy & Mental Health

Sunday 10th October 2021 ~ World Mental Health Day

It’s now officially autumn in the UK, and so the days are becoming shorter, cooler and darker.

For many of us, the cold weather and lack of sunlight negatively affects our mood (Seasonal Affective Disorder).

This impacts some people much more than others, and of course, it is only one factor that contributes to the state of our mental health.

I believe we all experience some level and form of depression throughout our lives, and for very different reasons.

We’re advised to explore the outdoors, take walks in nature, and get regular physical exercise to improve cognitive function and release endorphins . But for those of us with physical disabilities, this isn’t always possible.

As a powered wheelchair-user with congenital muscular dystrophy, I can’t go running, walking, swimming, cycling or to the gym.

Though essential, my physiotherapy sessions came to an abrupt stop, many years ago, at the age of 14. Accessing services as a physically disabled adult is beyond challenging!

Furthermore, some with disabilities, impaired immunity and chronic illnesses are continuing to shield, and therefore cannot safely access the outdoors.

Some are completely isolated, don’t have a garden and cannot drive. Others are suffocated by the constant presence of carers and those they live with, unable to escape the confines of home.

It’s surprising how lonely you can feel in a crowded room.

So, what do WE do? How can WE support and improve our mental health?

There is no straightforward answer, (sorry about that!), as we’re all different, and facing our own battles.

I, personally, get very frustrated with life, my limitations, the lack of assistance, understanding and empathy. It does often feel like physically disabled people are disregarded from society and forgotten about.

But we feel, we need, we want, we deserve, we matter.

What Would You Do If You Could Walk?

I lost the ability to walk 22 years ago, at the age of 1o. For me, becoming completely non-ambulant happened quite unexpectedly, over the space of a couple of weeks.

Back then, there was little to no guidance or support. I didn’t have a full diagnosis and my rather nonchalant paediatric consultant wasn’t the best!

We didn’t have the Internet or social media to research and connect with others living with muscular dystrophy. And, until I reached adulthood, I didn’t know of anyone else with the same condition.

It was difficult enough leaving behind my group of primary school friends and moving on to a different middle school. I felt very lonely and was struggling to integrate, when came the added pressure of immobility.

Attending mainstream school, I was the only one with a disability amongst hundreds of physically fit, healthy, happy kids. My family and I were very much in the dark and going it alone.

Prior to this, I could only ever walk short distances – around school and home, but never steps or stairs. Then, at age 10, I suddenly found myself unable to stay on my feet, constantly covered in cuts and bruises from falling, and I didn’t know why.

Me, aged 5, in my primary school uniform

I was referred to a counsellor, but met with them no more than 3 times, as I found it utterly pointless. How was talking with a complete stranger holding a clipboard going to help me? I couldn’t walk anymore and that was that. Get on with it, Carrie.

Yes, I was stubborn and sceptical even as a child!